How to manage a relationship when you have a chronic illness

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Reprinted with the kind permission of Sarah Borien and A Life Less Physical

The spoonie community is having a debate at the moment. How much should we thank the people who choose to spend their life with someone who has a chronic health condition?
 
In case you haven’t heard the two sides of the debate, it’s pretty simple.
 
One side of the argument is that having a partner/spouse with chronic pain massively impacts your life and means you end up as some kind of lover-slash-carer. Chronic illness sufferers should therefore be eternally grateful to the people who stay with us and give high praise to those who love us in spite of our disabilities.
 
The other side of the argument is the backlash to the above; people with chronic pain are not some kind of second-rate partner, we’re still human beings with opinions, values, likes and dislikes, and we’re not a project that you deserve a medal for spending time with.
 
Which side do you fall?
 
Personally, I think both are true. But I think that both are true of any person in any relationship, not just those that involve chronic illness.
Don’t we all think our partners are saints for staying with us in spite of all our awful traits? And don’t we all have moments where we think we deserve a medal for putting up with our partners when they’re being particularly annoying?
 
We all have our baggage and we all make sacrifices for our loved ones. When R and I first got together, he told me something that has stayed with me ever since. He said, we don’t have to be all things to all people. Just because I can’t go for long walks doesn’t mean R can’t – he just has to do that with someone that isn’t me. R refuses to go to spas because he doesn’t like being stuck in weird places with strangers – and apparently that’s what a spa is – so I have relaxing days out with friends instead.
 
I’m using flippant examples, of course. It can be difficult to be with someone who’s in pain a lot of the time, I know that. But I think we can all be difficult in lots of different ways, and surely it is more about how we handle these difficulties than whether or not they exist in the first place.
 
When it comes to managing chronic pain, my resilience is the most important thing to me. And it’s about being able to find that balance between sharing your struggles with your loved ones and complaining about every ache and pain you feel. If I articulated my pain every time I felt it, I’d drive myself crazy, never mind everyone else. It’s why I started this blog and it’s why the chronic pain online community is so good; there are people who understand and are happy to talk for days if you need to release your pain and frustration, so you don’t have to let it consume you and your relationship. I have a list of effective coping strategies which means I know how to look after myself and make things more manageable without having to tell everyone in the room about it. And I know that when I need a bit of extra, help my husband is there to help – just as I am there to help him.
 
I think the only element of this that I find challenging is perception. I know that people think my husband is amazing because he copes with me and my pain. And he is amazing, of course he is, but it frustrates me that people think we have a life that is particularly hard. It is no harder than coping with depression, anxiety, fatigue, children, a job you hate, a lack of motivation, an eating disorder, old age, stress… the list goes on. Life is challenging for everyone; my pain hasn’t created a life that is difficult for me or my husband and I would hate it if people thought that I had.
 
How does your health impact your relationship? Which side of the argument do you fall?


Sarah Borien lives in a country cottage in Oxfordshire with her husband and their two cats. She has had fibromyalgia since 2009 and is passionate about finding and sharing new coping strategies. Sarah authors her blog, A Life Less Physical, and has written for New Life Outlook (Fibromyalgia).

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One thought on “How to manage a relationship when you have a chronic illness”

  1. kj302 says:

    My husband of 37 years left me after I got sick. I had an episode where I was paralyzed for about an hour in 2010. My life has never been the same. I was going to doctors for 7 years before the episode; always tired, fatigued or some other ailment. It was a matter of when he would leave me, not if he would leave me. He started out relatively ok, but the last couple of years he started emotionally abusing me, but he still thinks that this is something I caused. I can’t get over it, because I can’t socialize. How do you meet people? I swear, I’m so lonely and hurt that he consciously hurt me and knows how much pain and suffering this has caused me. He said he needed a break from me; still loves me (right) but he thinks it’s just too depressing living with someone who is sick. It’s time to move on, but I just can’t. I’ve lost my friends & then I lost my husband. My kids are busy and weeks go by when I won’t see anyone I know. Since I’ve been sick, I’m no use to my mom, which is ok. She was a lot of high maintenance.

    I have other health issues, but ME/CFS is what stopped my life. I don’t know what to do. I’m scared and alone……….

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